Diverse teams build stronger standards

Who do we include in the planning of how we use genomic data to improve human health?

Last week I participated in and gave a keynote address at the 8th plenary meetings for the Global Alliance for Genomics & Health (GA4GH). GA4GH plays a critical role in enabling responsible genomic data sharing within a human rights framework. This work includes framing policy and setting standards that meet the real-world needs of the international genomics community.

I was introduced to GA4GH in 2016 through my role at ORCID. My objective then was to work on how to ensure that genomics data can be accessed by the broad set of researchers that need it. In June of this year, I deepened my involvement with GA4GH to lead its Equity, Diversity and Inclusion (EDI) Advisory Group, working on how to ensure that the created standards and policies reflect the needs of the broad, global health and research community and patients.

Sharing data is good, right?

The global battle against COVID-19 has shined a light on the urgency of investing in public health capabilities in every corner of the globe. It is becoming common practice for patients to be presented with requests to share their health data (including genetic data) when being tested or treated for the disease. The goal here is to enable a broad and diverse dataset to best understand the disease for all humans across the social and geopolitical boundaries that we have created. And, standards organizations like GA4GH organize the community to create the rules and guidelines both for asking for this permission, and for sharing and using the data once the permission is granted.

Avoiding blind spots

“The lack of diversity in research studies is leading to blind spots.” - World Economic Forum

A recent report from the World Economic Forum warned: “The lack of diversity in research studies is leading to blind spots.”

Especially when research takes on an international dimension, we have to be cognizant about knowing how much we don’t know - just consider all of the historical, social, and cultural context of the communities and people who are represented by the entirety of the human genome.

Data diversity REQUIRES diversity in the team creating the standards

Diversity is indeed critical in every aspect of research; including in the teams who develop the standards that enable this research.

When we think “diversity”, …we also have to consider… region, industry, background experience, sector viewpoint, and more. …it’s critical to cultivate a wide diversity of viewpoints altogether.

I was honored to recently be asked by GA4GH to chair the EDI advisory group focused on ensuring greater diversity in the teams that develop these standards. When we think “diversity”, we might first think of areas like race and gender. As critical as those are, we also have to consider other areas - region, industry, background experience, sector viewpoint, and more. In short, it’s critical to cultivate a wide diversity of viewpoints altogether.

Diversity simply enables greater innovation and problem solving; that should be self-evident when considering the benefits of more voices included at the table - and ensuring that there are not unintentional barriers erected to prevent genomics work from potentially benefiting all humans.

During the short time I’ve spent on the advisory group, I’ve gained an even greater respect for the role that culture, relationships to the earth, and history play in ensuring this respect and dignity. We need diverse voices in our conversations to open our eyes to what may not already be in our lexicon.

The policy and ethical guidelines that we create can sometimes seem abstract to others; the same goes for the technical constructs we establish. But it is essential that we balance this need for technical or policy expertise with insights and contributions from viewpoints that deeply matter even if, on first blush, they may not appear to have relevance to a technical protocol, or a legal nuance. We need diverse voices to ensure that our solutions are feasible to the largest community possible.

The consequences

Lack of diversity in the standards creation process can lead to two key risks:

Can't Use

The first risk is that some communities will not have the technical resources, infrastructure or skills necessary to leverage the standards that we put in place, thereby excluding them from participation.

Won't Contribute

And the second risk is that some individuals will object to their data being included in these research data sets because the ethical and policy guidelines that we have defined do not resonate with them, leading to incomplete representation of the human population in the datasets influenced by our standards.

The EDI group is tasked with helping GA4GH to avoid these terrible risks by ensuring that the standards community is diverse and inclusive. These measures can help ensure that data can be accessed and used by those who need it, and that in collecting the data, we understand and respect the full range of cultural, legal, and ethical constraints globally.

So, who do we include when planning of how we use genomic data to improve human health? Although the question is difficult to answer, it almost certainly should include communities that don’t come to mind on first thought. But, it is worth that extra effort. If we can ensure greater inclusion of voices now in how we develop our approaches, we can build a brighter future for all.

Be Different.